"When your life is framed by dis ease, the decisions about what you can handle, what you can take, what adds meaning and what subtracts life force take on significance that makes the day to day existence of ALS seem like a vacation. Such decisions are elephants in the room, invisible and waiting for someone to grant them permission to become visible, to acknowledge their presence, to speak their truths no matter how painful. Elephants almost always appear when suffering is present, and I am to blame for the elephants I can see. By not blogging for the past four months, there are so many elephants that have wheedled and cajoled, quietly appeared or loudly announced their presence, that they have taken over every room, every seat, every open space, and I cannot help but be overwhelmed by their sheer number.
Not since my diagnosis have I gone this long without blogging.
I have been very busy writing, and our book, We Know How This Ends, is in its final stages before production. But I have to admit that in paying attention to the larger picture painted by writing a book, submitting, resubmitting, and resubmitting again drafts for editing, my viewpoint has out of necessity been at the 30,000 foot level. From up here, you can see all of the elephants, but the details are not specific. It isn’t a bad place to hang out, but it does not lend itself well to the daily processing that dis ease demands, especially if you are trying to stay in that space between grief and fear, pleasant memory and the anguished unknown, past meaning and future possibility. And, in spite of the incredible support of my co-author Cathy Wurzer, the many small yet largely significant physical changes I have gone through in the past four months are piled up on my lack of interpretation, leaving me much more susceptible to tortured feelings and harmful vulnerability. Really, you think I write to you to keep you informed? I am much more selfish than that.
I need the therapy of blogging; there are elephants in the room.
In early July, I began using BiPAP for breathing support. BiPAP is a more active version of the CPAP that many people use for sleep apnea. I must have been starved for air, because within 10 days I was using BiPAP almost 24/ 7. There are two ways to use this machine. It has its own stand and a humidity element that keeps the air warm and moist as I breathe. This is my preferred manner for using BiPAP. You can imagine that if you had wind blowing up your nostrils, your poor little nose would get sore both outside and in. The humidity helps but isn’t quite enough. My BiPAP machine is also on batteries that can be tied into my wheelchair. This allows me to make transfers or to leave the condo with the BiPAP machine functioning sans humidity. It is OK for a little while, and it keeps me from having breathing events when I transfer from one place to another.
With a long BiPAP hose hanging from my face, I joke with my friends that I am the proverbial elephant in the room, and unbeknownst to them, I am.
The air hose that comes off the machine enters through nasal pillows held by a head strap against my nose. The advantage of using the nasal pillow interface is that I can talk. Other ALS friends of mine that use a full face mask cannot talk with their masks on. But thankfully for me, and probably not so thankfully for my friends, I am able to speak while wearing my BiPAP mask. Unfortunately, BiPAP makes me sound like I have a terrible head cold. Words like “nine” come out as “died,”and “mom” comes out as “Bob.” I tell my friends that just as I need to concentrate on my pronunciation, they have to put on their BiPAP ears so that we can communicate with some semblance of understanding.
Like any good elephant, I ask people who have not seen me on BiPAP before, if they think it makes me look fat.
At first, I tried to use the BiPAP with my diaphragmatic pacing system. Unfortunately, the DPS is slightly out of sync with the BiPAP. Thus, I was required to try to consciously synchronize the kick of the DPS with the breath of the BiPAP, and for a while, I was able to do it. However, over time my strength to control the synchronization has waned and the DPS has become quite painful, so I no longer use it. I have to admit that I feel a little bit guilty about that. But then I remind myself that in reality, the DPS for ALS is a clinical trial, and until we gain a great deal more evidence that can be meta-analyzed, we just will not have the requisite knowledge for best use and application. I have learned the hard way that one of the great challenges for treating ALS is that everything is on the front lines of knowledge. Just when we think we have figured something out, new knowledge emerges that ironically enhances what we already know while at the same time putting us back to square one in what we understand.
If you listen carefully, you can hear another elephant trumpeting its song in my dis ease life.
The minute I remove the BiPAP mask, my voice becomes so soft that it is barely discernible. The amount of air that I can move through my system without mechanical support is miniscule at best. I am literally out of breath without this machine. Not having the strength to synchronize the DPS and the BiPAP, barely moving any air in and out without support, and other losses are all indicative of dis ease and its handmaiden ALS, especially in terms of where things are in the elegant progression of this remarkable disease. From here on out, life is only too short for me.
So many elephants, so little time.
The greatest elephant in the room is the worry I carry about what happens to my beloved family and my loving friends after I am gone. I know full well that they will keep on keeping on, that their lives will be joyful, and that the sadness that we feel together now will dissipate into a lovely longing for days gone by. But I cannot help but worry. What if all that I have learned and sought to pass on is for naught? What if they forget how to remember my love for them? I know these are small concerns considering all of the adjustments ahead of them. I just want them to deeply know how much I love them and how much my life was bettered by being in their presence. I want them to know how healthy I feel in spite of ALS. I want them to know that because of them, I knew grace.
And in spite of the visual evidence, nose extension and quiet voice, the grace that I feel is the real elephant in the room, gently waiting to take me home."
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